Couldn't sleep

I couldn't sleep last night. I was tired but just couldn't fall asleep. So many thoughts just running through my head. I ended up watching Jerry Springer which by the way can't possible be based on real stories?

No, but seriously though my thoughts just won't stop. I try to keep myself busy but I'm just too tired when it's 3, 4, 5am.

I have a couple of baby pictures hanging on my wall. I look at them, I look at her. The cutest little baby with a smile that could make the sun melt. Yeah, I was a very cute baby haha. Apparentlty I was the easiest baby in the world. Never cried or made a fuss. I was a piece of cake. Slept, ate, pooped, and laughed.

I wonder what my children will be like? I wonder if I will have children?!

Did You Know...

....that if you straighten your back when you're crying it actually becomes impossible to physically cry? That's why I stare up to the ceiling sometimes when I'm about to cry, it helps the tears fall back to my heart.

Out of Sight, Out of Mind

Ever since I came back from Egypt, I've literally been cleaning my apartment inside out. I don't know what's come over me. Every few days...sometimes every few hours I'll just start getting rid of things, whether it be clothes, makeup, papers...anything I've just been accumulating I've gotten rid of. It feels good. It feels necessary. I mean I do this once in a while, but this time I went the extra mile. It feels like I need to get rid of a bunch of bad energy somehow. Clutter. Shit. I just want it out of my way. Out of sight out of mind.

I'm still up (obviously). I'm tired, exhausted, but I just can't bring myself to drag my body to bed. Somehow I think I'm avoiding it. The night saves me in a way, yet it's usually the worse time of day for me. I'm saved from the phone calls, the conversations, and the Dr appointments. It's the worse because as darkness comes, that's when my thoughts start to scream. They yell!! I feel my heart bounce. I calm myself down by keeping busy, listening to music to dampen the screams, to push the noise away, to prevent my eyes from tearing up.

So tonight, it's cleaning...again. I get obsessive. Everything has to shine. Everything has to be in a certain place. Everything has to look a certain way. I can rearrange something several times until I get it right. Perfection. Obsession. It never ends. Like my thoughts. They never end.

The time has come. It's time to sleep. To gain the energy to face another day. My day. My reality. My life.

Then I'm quite the character.

Anyway..enough with this emotional bullshit. Tomorrow I will be fit for fight!!!

Take a Step Back and Breathe.

I don't even know where to start. I don't know if I have the energy to write this all down. So many problems. The doctors, making misstakes...STILL! My dad looked through my scans and noticed that I had a slightly enlarged liver and suspicions of other lesions in other parts of my body. The idea of shock is no longer in my conceptual framework anymore. I mean what do you say at this point? OH MY GOD? What the FUCK? No, you just take it in, take a step back, and breathe.

So many things need to be done before I start chemo. A part of me has all the energy in the world. The other part of me just wants to go to bed and hide. Do you know that I wake up every morning expecting everything to be a dream?! Then I take a step towards the bathroom and I'm reminded by the pain in my hip. I feel my skull and the bump is still there.

Every night I go to bed, and I dream about my disease. I dream about chemo, about radiation, about the emotional rollercoaster ride that doesn't seem to have an end. I dream about death, a lot. I know I know...this all sounds so dark and morbid. But it's not. I can imagine this is normal. Guess it's just the fear of what's to come.

I may be strong in every sense of the word. But I'm scared, in every sense of the word.

What To Do?

What do you do when you just don't have the energy one day. Who will fight for you on that day? Who will pick up the pieces? Who will be your voice? Or is it REALLY ok to have an off-day?

My dad looked at the scans I did about a week ago. He couldn't believe the Dr's rapport. First she miscalculated the size of the lesion on my hip. Second, she didn't use the same technique on the CT scan that was used last time I did a scan (that is the scan on my skull). So either way, you can't compare. Second of all, the CT machine that was used was a very old model, one that hasn't been used since the 90's. CT technology has advanced A LOT since then. Above all that, the Dr said she didn't find any other lesions in my body and that no other organs were affected. Well, when my dad looked at it he suspected other lesions in other parts of my body. He also noticed that I had a slightly enlarged liver. So you tell me, how am I suppose to trust the Dr's when they can't even do the job right the first time.

When I asked MY Dr (the oncologist) that I needed to to a PET scan before I begin any treatment he wondered WHY? I had to EXPLAIN to him over and over again what my dad had ALREADY explained in an email. He basically didn't even read it.

Lethargic

I cannot believe how tired I am. Even when I've slept all night. OK...fine, so I fall asleep late. But that's never been a problem for me. I just can't keep my eyes open. My whole body is just...dead. I was at work late today and I thought I'd take a nap. I ended up sleeping for an hour and a half. I don't like me very much right now. I don't like not having the energy. I just want to carry on as normal. It's bumming me out.

One of my best friends, who's wedding I missed just sent me a link to see her wedding photo's. I couldn't go through them all. Not right now. It just hurts too much. It reminds me of what I missed, her wedding day. It reminds me of why I couldn't go. It reminds me of what I will be missing in the next couple of months. I looked through a few, and she looked, stunning...the whole wedding just looked so perfect. Amazing. I'm so happy for her, I couldn't be happier. But at the same time, here I am, with tears running down my face.

Anyway...I'm going to go to sleep and wake up refreshed I've decided. I can barely keep my eyes open and I'm in dire need of my best friend...codene (he will take away ALL your pain...well...if you take a few, one isn't enough, and 2 gets me high...yepp..that's my aim every night...get high and pass f*** out!!)

Saying it out loud

So today I told my colleagues about my diagnosis and what's to come. I kind of went through it with my professor beforehand. I felt so calm and confident. But as soon as I walked through that door and sat down, I got a knot in my stomach. Watching everyone stare at me made me realize what I was about to say. My voice was shaking, everyone was focusing.

But they were amazing. Everyone was very supportive and it felt so much better afterwards. I cried for a minute or two, but that was more a reaction to what a dear colleague (and friend) of mine said. She was just being so supportive and in that moment it just hit me I guess, somehow that this is all so real. There will be times when I physically cannot do things on my own. For someone that highly values my independence and has a need for control...well...it's hard.

I've been fine so far. And I'm fine as I write this. But in certain instances, in that particular moment, it just hits me like a star falling from the sky. I'm going to have chemotherapy. I'M GOING TO HAVE CHEMOTHERAPY!!!!

What is Langerhans Cell Histiocytosis?

I'm going to try to explain this as simple as possible.

Langerhans cells are a type of dendric cells of the skin. They can also be found in different parts of the body.

Histiocytes are cells that belong to the immune system. They are produced in the bone marrow along with white blood cells and red blood cells. They travel through your system to protect your body from infections. One type of these histiocytes are Langerhans cells.

Histiocytosis is the overproduction of histiocytes. Histocytosis is also an umbrella name for a group of rare diseases that share the same characteristics. Histiocytosis can attack any part of the body: skin, bones, muscles, organs (liver, kidneys, spleen, stomach, lungs, etc.) Histiocytosis also belongs to a family of other blood related diseases (diseases that derive from the bone marrow) such as leukemia, lymphoma, and erdheim-chester disease).

All types of histocytosis are very rare. LCH in particular, is most commonly found in children. The prevalence in adults is even more rare.

Cancer or Autoimmune disease?

Medical researchers have to date not agreed on how to classify LCH. Some argue that it is a cancer because it behaves and acts like a cancer. That is, the abnormal proliferation of cells which is by definition a tumor. Others claim however that it is an autoimmune disease because Langerhans cells are a part of your immune system. So, in this case the Langerhans cells are attacking your own body instead of foreign objects. The most recent research is leaning towards cancer however. But, some still stay firm claiming it's an autoimmune disease. Why people develop this disease is unknown. LCH in particular is a mystery and is commonly known as Histiocytosis X - cause unknown. Maybe that's why it's hard to define what it is.

Type I: unifocal. Benign. Affects only one part of your body, in one system. It is a slow progressing form. It usually involves bones, most often the skull. Can be solved easily with surgery and mild radiation therapy if necessary. In some cases doctors have found that the bone regresses and heals itself. Excellent prognosis.

Type II: multifocal unisystem. Malignant. Affects several parts of one system. For example, several area's of the bone. Other complications follow. Usually chemotherapy in combination with steroids is necessary to treat this type. Prognosis: around 60% chance of relapse.

Type III: multifocal multisystem. Aggressive malignanancy. Affects several systems of the body. If it affects your risk organs such as the liver or spleen, then the prognosis declines severley. This type progresses fast and should be treated with aggressive chemotherapy. The mortality rate is around 10%.

I was first diagnosed with type I. Then with the lesion in my hip, they diagnosed me with type II.

So why am I going through chemotherapy?

Because the lesion found in my hip developed within two months. This is fast progressing which could indicate I'm in a danger zone. If it managed to progress this fast within 2 months, it could mean that there's a high risk it will spread to other bone parts or in worse case, start developing in my organs (type III). So the solution is to start with chemo.

By the way...

...if anyone has any questions, it's OK...ASK!!!! I'm MORE than happy to answer. I'm not going to break down. SO ASK AWAY!!! Actually, I'd rather you ask than look it up online, some of the photo's of the most severe cases are quite horrid and it might scare you off. So please, ask me, not google. Trust me, I know a LOT about it now ;)

Where it All Began...

For all of you that know how this all progressed don't really have to bother with this part ;)

November, 2010It was a Thursday. I remember it like yesterday, a cozy Novermber Thursday evening. I was on the phone with a friend, laughing, talking, and playing with my hair. I felt a bump on my head. I told my friend laughing. I tried hard to remember if I had bumped my head lately. Nope, no memory of that. You know me, I’m a clumsy ass...I mean, I've literally fallen off a bus...yes..OFF A BIG RED BUS!!! So a bump here and there isn't unlikely in the life of me.

Christmas-January, 2011

Time passed and the bump remained and painfully so. I couldn't sleep on the left side of my head. After a well needed vacation in Egypt over Christmas, I went to the hospital and got a scan. I didn't think much of it.

FebruaryWeeks later, I got a letter home. It was freezing that day, chilling. "bla bla bla....high suspicion of Langerhans cell histiocytosis or a neoplasmic mass." WHAT THE DUCK? (Yes, I love saying that expression!!!). I called my dad, read the letter. He couldn't believe it. I didn't understand. He made me read it over and over again as if he had no memory of hearing me the first time. "Come home immediately, H." In my world, he was just being dramatic. He wasn't.

All I really remembered was my dad showing me the scan of my head on the computer. As he scrolled down, he pointed out the piece of my skull missing. Imagine someone took a bullet and shot it through your head with no exterior wounds, just a clean hole through the skull. He explained what the letter said. Langerhans cell histiocytosis is a rare disease of the immune system. A neoplasm is a tumor. So basically, my alternatives were Bin Ladin or Palin for president of the world (JOY TO MY LIFE!!!). Let’s not even get into the fact that I got this letter sent to me, at HOME, ALONE!!! I was in shock, I couldn't speak. Every word I said was like talking under water. I cried. A lot. For two days straight, I cried.

So a few biopsies later, the Dr's confidently diagnosed me. Langerhans cell histiocytosis (yes it's a mouthful to read). At first I didn't really understand what it was...hell, I could barely pronounce the damn name. I was too busy dealing with the whole ordeal. Reading about it didn't really make any sense either. It took a while for me to understand. But I was naive at the time. I mean, if I was diagnosed with such a rare disease that could have serious consequences, surely the doctors were going to prioritize ME (HELLO!!! CENTER OF THE UNIVERSE SPEAKING!!!!). They would take care of everything. I laugh just thinking about it, I chuckle.

They did NOTHING!!!

March - June

So began the journey of frantically calling doctors, trying to find the right doctors to deal with this, and the worse part, having to explain the entire story from A to Z to every new person I spoke to. So, I did the research. After all, I am a researcher, that's what I do. Finally, I took all the most important research articles, from the high impact journals, the most cited ones, and highlighted the most important findings in each article. I walked up to my doctor and smacked the articles on his desk, and told him "There, I did this for you. Now what are YOU going to do?" Finally, I was immediately sent to the Oncologist and he did a full body scan of my bones and a bone marrow biopsy. The bone marrow biopsy was done to exclude the possibility of leukemia or lymphoma (LCH belongs to a family of diseases, usually diseases that derive from the bone marrow). The results came back negative, I was free of other cancers, and the scan came back negative of other lesions. I felt relieved, I could breathe again. All I had to do was to have surgery on my skull. I chose to postpone it for after August though for personal reasons. It would all be over soon. Or so I thought.

A couple of days after the bone marrow biopsy I started feeling an excruciating pain in my hip and leg. It was the kind of pain that takes your breath away. Every night, I'd feel the pain. I went to the ER, they waved it off as an inflammation from the bone marrow biopsy, "Don't worry, it will disappear, just take a few ibuprofens and you'll be fine." I went home thinking that would solve all my problems. It didn't. As time went, I kept calling the oncologists at the hospital and complained about this horrific pain, the pain that made me want to put a bullet through my head to spare me. "It's ok H, it's probably just an inflammation, it will disappear in time. But just in case, we'll prescribe you some codeine to relieve the pain."

July

Time passed. The pain didn't. It got worse. I had a gut instinct that something wasn't right. So, on my vacation in Egypt, I got a CT and an MRI scan done of my hip and pelvis. "H, your histiocytosis has spread to your hip, almost half of it has dissolved." I didn't believe what the Dr's there were saying. I honestly thought they were being stupid. They weren’t. I was in denial. "Nooooo, I'm telling you, I had a bone marrow biopsy done recently, it's an inflammation!!!" In the heat of my frustration, I grabbed the results and went to my cousin who's a doctor to take a look at them. "H, I'm sorry, but a bone marrow biopsy is usually very small and it's taken in the pelvis. This is your hip bone. They're far apart. And a bone marrow biopsy is usually just about 1cm wide, this lesion is 5x4 cm wide."

August

Nervously, I contacted my Dr over mail and sent him the scans. He booked me in immediately for an appointment the day after I arrived in Sweden. "This is not good, H. This lesion must have developed since your last scan. This means it's become malignant, it's spreading." He started talking, lingering around with his words. That's never good. "Just tell me, what is the treatment?" "Chemotherapy, 6 months". I cried.

I walked out of his office with four legs. He wanted to put me in a wheel chair first but I refused. So he gave me two crutches to walk on. He forbid me to go to London for one of my best friend's wedding. He forbid me to go on a work-trip to Croatia. "Stay put, stop moving. Your hip is ready to snap. You're 27 years old, you shouldn't have a hip replacement at this age."

I called my friend, I was in shock. I tried to laugh it off, but inside there was a child that was terrified. How did this all happen to me? When did this all happen? Why?

I went to the two people I knew could calm me down immediately. My professors. I cried, I talked, and I laughed. And they let me. It was exactly what I needed. They supported me, made me feel better. We talked about it all, everything. We joked about it. We talked about ways to cope with it. And it helped. And honestly, I think that that conversation alone, is what made me feel OK right now. Sure I still have ups and downs. But the downs aren't so far in the gutter. They pass. And I bounce back faster. I see things in a new light now. A positive light.

So here I am. 9 months stronger. Three seasons wiser. A lot more happened, trust me, A LOT MORE!!! This was the SHORT version believe it or not!! I'm writing this blog, mainly to vent and to express myself. I need to. It is what it is. I'm not the type that gives up easily. I will cry. I will laugh. I will think it's unfair. I will develop. I will have my dips. But the best part of it is that I will come out of this, stronger, happier, and healthier, better, and fit for fight. It's been quite the journey, but at least I'm half way through.

At least I can put it on my CV. I've had chemo before the age of 30. What have YOU done before you turned 30? MUUUAHAHAHAHA! Yes, get use to it. Anyone who knows me knows I have a very twisted humor!!